Tag Archives: sleep

by

June JuJu

I have had a bad backslide this month. It started with headaches in the first week of June, then bowel inflammation and bloating, then weakness, exhaustion and a constant buzzy/numb head… On the 10th, I had one day of terrible pain in all my joints: hips, shoulders, hands, wrists. On the 11th, I had a histamine reaction with my throat spot getting very itchy for the first time in ages, coupled with the internal fire that I call flushing. On the 13th, I had unusally bad blood pooling and swollen hands and feet. On the 14th, I woke up with the worst muscle pain I have had in probably over a year… full-body, every movement hurt, muscles I forgot existed… and it sent me into the emotional doldrums: I can’t do this anymore. What’s it all for? I can’t live like this. My whole life was useless. I never had a family, I never made a difference in the world, I worked and studied and worried for nothing because it was all for nothing and useless and life is meaningless blah blah blah… That was brought on by seeing an old friend’s holiday photos of beautiful people gallivanting in the sun with their beautiful children and their happy, youthful I-haven’t-aged-a-bit-in-the-last-23-years smiles. One should never look at Facebook when they are bedbound in extreme pain and it’s summer.

On the 15th, I realised the deadline for Social Security to receive my disability paperwork (work history and function report) was the next day and I panicked. I’d read the letter wrong and thought I had another week. It should have taken a week to do, but I had to cram it into 24 hours. They write on the form that it should take about an hour to fill out, which is hysterical. It took me about 10 solid hours. I had to research the jobs I had and how much I was paid back to 1997! I had to describe every position I held. I had to estimate things like how many hours a day I stooped, bent, knelt, sat, walked etc. For each position! Seriously? How many hours a day I bent?? For fuck’s sake. For all my restaurant jobs, it was fairly easy: I walked all day, every day. But, they wanted to know things like how many hours a day and days a week I worked. Well, some weeks it was 3 shifts, 10 hours a day and some days it was 14 hours a day and 7 days a week (when we were opening restaurants). I was that person who was writing in tiny letters in the margins, giving explanations and qualifiers that will never be read. They’d ask something like, “What did you do all day in this job?” and give me one line to answer. What didn’t I do all day? That would have been easier to answer. As COO, I did everything. They wanted to know how heavy objects were that I lifted: “What was the heaviest object you lifted? How much did the objects that you lifted most of the day weigh?” I wound up texting my friend from my old job: “How heavy do you think 3 of those dinner plates loaded with food were?” We were blessed with the heaviest plates in the industry and the heaviest food. Tex-Mex doesn’t leave any blank room on the plate.

For the function report, they asked the same questions different ways for 12 pages. Maybe they wouldn’t be the same answers with other illnesses, but with this one they are: “How has your social life been affected?” “How have your cooking habits changed?” “What household chores can you do?” “How have your hobbies and past times changed?” “What can’t you do now that you used to be able to do?” Over and over: I can’t do any of it anymore. All of it has changed. I was excited when I got to the question about dressing myself: Yes! Yes, I can do that!

So, the 15th and 16th turned into the familiar nightmarish feeling of deadlines and all-nighters. Oh, how many times did I leave all my assignments and studying to the last minute in college. It was my M.O. Always was, even in secondary school. I stayed up all night studying for my leaving cert (the final exam at the end of high school in Ireland) maths exam and then took a nap in the early hours of the morning and slept through it! (Side note to any young ones reading this: I thought the world was going to end. I was a perfectionist even then and, when they wouldn’t let me retake my exam, I thought my future was lost… I’d never get into the colleges I wanted to attend… it would be a black scar on my record for evermore… But, guess what, it made no difference in my life. You’ll be ok, no matter what the outcome of the leaving or the SATs or any of it. Life is much, much more.)

I put ear plugs in and sat secluded for hours upon hours trying to fill out the paperwork. My brain wasn’t working and I had to get my husband to help (“What symptoms do I have, honey?” “What hobbies do — did — I like to do?”). My hand was cramping and my vision was pretty much gone, so I went to bed and finished it the next day in a complete stupour of pain and nausea and bricked-ness. The SSA said that it was okay that it was late. I called 3 times to verify that and they kept saying it’ll be fine, so fingers crossed I didn’t screw myself.

On the 17th, I awoke in the middle of the night with an evil migraine, which is still lingering today. I have been chilled and achy and wired the last few days, trying to figure out if it is something I ate that caused the joint pain, muscle pain and migraine — is it because of all the histamine foods I have been adding in? — or is it just the unrelenting disease and the stress and overworked brain? Last night, I couldn’t get to sleep until 1am and I awoke at 5am with my heart galloping from a nightmare. I’ve been wide awake with my brain on fire ever since. Can’t deep breathe or meditate, can’t concentrate or be productive, can’t jump out of bed and tackle the day. Just have to lie here, my body a bee hive of activity and my eyes barely able to focus.

Chronic illness gods, I’m sorry I mentioned that something was working. How dare I?! Please give me some respite. I’ll be good.

by

What I’m doing now that may or may not be making a difference.

This morning, I had a high resting heart rate of 67 bpm. Yesterday, by comparison, it was 56. Since I’ve been tracking my morning HR, it has been a fairly good predictor of how stable my body will remain throughout the day. I anticipate that today it will be a little more difficult to go up and down stairs, I’ll have to rest a bit more, my blood pressure might be lower and I’ll undoubtedly take fewer steps than my current norm. I can tell by how achy I was this morning. But, last night, while getting ready for bed, I was happy and hopeful. I was feeling like I could really get better enough to live again and I vowed to write a post today about all the things I do that may or may not be helping.

I’m a completely different person than I was over Christmas. I thought I might never talk properly again, walk more than a few shuffling steps again, that I might just die in my room. I’m so happy now, my skin looks good (the dermatologist’s protocol worked!), I haven’t had to check my blood pressure or blood sugar in months because I feel stable. I don’t know what has brought about the difference, but I’ll list everything I do here so that I can reference it in the future and maybe it’ll help someone.

  • I stopped panicking about my sleep. Of course, if I get fewer than 4 hours, I’m upset and worried, but I seem to be able to sleep pretty well from 12am to 5 or 6am, so, I’m going to trust my body and be okay with that. When I’m crippled and hazy from lack of sleep, I remember the eternity I spent in viral, malarial night sweat hell. There is not much these days that is as bad as my nights were from November 2011 to early 2013. I will never be able to adequately describe how sick I was as my body tried to rid itself of whatever evil has invaded. So, I will take constant awakenings and nightmares in a DRY bed any day.
  • I track my resting HR every morning before getting up and before taking my thyroid hormones.
  • I lie in bed for a few hours in the morning, cuddling with my dogs and reading, with the shades open to let light in and set my body clock.
  • I wear my pedometer every day and have been taking 1300-1500 steps a day for the last two months versus 300-600 in December.
  • I usually have my light box on for about 45 minutes while I’m on the computer with my morning tea.
  • I only drink teas that I have researched and I trust the companies (their growing procedures, their tea bag materials– here’s some good help) and, besides my morning decaf black tea, I only drink teas that can supposedly help with one of my symptoms (tulsi, roasted dandelion root, ginger, chamomile, peppermint, licorice, fennel).
  • I drink a vegetable juice every few days in the morning, on an empty stomach (following these tips).
  • I do preemptive rests, as well as recovery rests. I lie down a minimum of 3 hours a day (on top of the 12+ hours I’m in bed at night). Ideally, this would be in 3 separate hour-long meditations, but it often winds up being 2 sessions. When I’m not doing very well, I can usually get out of bed for a few hours in the morning and the evening, but I might spend from 12pm to 7pm in bed, on top of 10pm to 10am. My preemptive rests consist of relaxation and meditation. They work by recharging my body and brain in what feels remarkably like what I imagine an old crappy phone gets when plugged in for an hour (my best friend described my body this way when I was still functioning and not housebound and I didn’t quite get how accurate it was until I spent a year “plugging in” to bed throughout the day). Recovery rests are different. My initial warning signs these days are neurological: my voice gets very weak and I slur badly and can’t find words. My head hurts, vision gets blurry, tinnitus cranks up, coordination is off and I get internal tremors. Everything takes immense concentration. The worst symptom, though, is what I call my “buzzy head.” It’s like internal tremors in my brain. My forehead feels numb and my brain physically feels like it is buzzing and vibrating… like every mitochondrion is rocking back and forth, sputtering and smoking, trying its best to spit out a little more energy– billions of microscopic engines, overheating, gauges in the red, pushed to the max. When this hits, it’s a really bad idea to push through and I go straight to bed and usually fall into a brief in-and-out, trance-like sleep as my brain recharges.
  • I do breathing exercises every day. While resting and during meditation, I do deep breathing techniques that I learned from a video to help with MS pain. They help strengthen my diaphragm and increase oxygen and carbon dioxide. Then, throughout my rests (and any time I think about it throughout the day), I practice abdominal breathing to help settle my nervous system and calm the fight or flight response, which we live with permanently when we have central sensitization issues. Jackie over at lethargicsmiles has a great description of this type of breathing here. I’ve also read that some people benefit from purposely slowing down their breathing to help blood gas absorption.
  • I change up my meditations depending on how bad my symptoms are. Sometimes I need complete silence and I lie very still with ear plugs in. Sometimes I just need white noise and I listen to Kelly Howell’s CDs that use binaural beats to stimulate alpha, delta and theta brain waves. All other times, I alternate through yoga nidra, Buddhist meditations, guided imagery, affirmations, body scans and simple breath meditations. Find some more links at the bottom of this post.
  • I loosened my routine and relaxed my demanding brain: if I need to spend all day in bed, that’s okay. I go outside when I can, I eat junk food when I want, I don’t beat myself up if I can’t bathe for a week or don’t go to bed until midnight.
  • I made peace with my cpap. I try to wear it every night, but, if I take it off after a few hours, it’s okay. And, if I don’t wear it at all, it’s okay. I know I feel worse when I don’t wear it — I keep that in mind and try to be organised about washing it early in the day because, before bed, I often don’t have the energy — but, when I don’t wear it, I don’t panic about the hundred million apnea events that woke up my brain while I “slept”. It’s okay. I’ll be okay.
  • I try to get to physical therapy every month or so, massage every two months (I would like these to be much more often, but can’t justify the money) and I was going to start regular hydrotherapy, but, unfortunately, after the first session, I realised it’s not worth the expense ($83), so I will try to mimic it at home (basically, hot and cold towels and electrostimulation).
  • Food: I’m sticking to my low-histamine + autoimmune protocol diet for the most part (that is: NO gluten, grains except rice, dairy except butter, legumes, nightshades, nuts, seeds, eggs, and no high-histamine foods, such as pork, tomatoes, eggplants, spinach, bananas, vinegar, fermented foods, processed meats, tinned fish/meat etc.). I was strictly low-sulfur for a month and that might have contributed to my feeling better, but I have since stopped that. I don’t beat myself up for my Kerrygold addiction and I don’t worry about my constant snacking and the fact that I go through sweet potato chips and plantain crackers by the bag-load and can’t seem to quit Salted Caramel Chocolate coconut ice cream. Life is too short. We buy organic and I eat a huge variety of veg and herbs. We always have fresh parsley, basil, rosemary, thyme, cilantro, ginger… We buy meat from farms we’ve researched and distributors we trust and make a lot of bone broth, which I drink everyday with a gram of salt in each mug. I recently switched from non-stick pans to stainless steel and cast iron. I drink filtered water. And I keep a detailed food and symptom journal (which, really, has told me nothing). That’s more than I ever did in the first 39 years of my life, so I’ve come a long way.
  • I’ve switched some products: I use Tom’s deodorant and toothpaste. I use supposedly less toxic shampoos, soaps and sunscreens. I use a face wash, moituriser, dish and clothes detergent that don’t make me gag with perfume and are kind to sensitive skin.
  • I use dry eye drops throughout the day and the Rxs from my dermatologist on my face. At night, I put castor oil over my liver and Badger sleep balm on my throat. When my neck is acting up, I use my TENS unit, cervical traction and Tiger Balm neck and shoulder rub. And then there’s vitamins and supplements…
  • Here’s what I take currently:
    • Morning:
      • thyroid hormones (T3 and T4)
      • Probiotic
      • 2.5mg Prednisone
    • Before meals:
      • Thorne Bio-Gest (for gastroparesis)
      • Digestive Enzymes (for gastroparesis)
      • 250mg yucca (for high ammonia/CBS mutation)
    • After breakfast/mid-day meal:
      • 500mg Acetyl L carnitine
      • 100mg CoQ10
      • 36.5mg riboflavin 5’ phosphate
      • 15mg zinc + B6
      • 500-1,000mg vitamin C
      • 100mcg molybdenum (for high ammonia/CBS mutation)
      • Thorne trace Minerals
    • Sporadically:
      • 1 tsp Calm magnesium + calcium
    • After dinner:
      • 2,000mg fish oil (1,000mg EPA, 50mg DHA)
      • 4,000iu Vitamin D3
    • Before bed:
      • 400-600mg magnesium glycinate chelate
      • GABA+theonine
      • 1mg Melatonin
  • I am soon going to add charcoal, Thorne Medibulk, biotin, and a second probiotic with histamine-lowering strains of bacteria.

Something is making a difference. Or maybe it’s just time. Who knows? But I will continue to persevere.

by

May Update

Let’s see, what’s been going on in my life? Well, April was the best month I have had in about six months. I have been walking 1000 to 1500 steps a day instead of the 500 average in December. I have been out of bed for about 9 hours a day instead of the 5 that it was for so long. I’m still housebound, but I’ve been in the garden and tried driving myself to nearby appointments. Best of all, I’ve been upbeat. Just like that… I get some space from the crippling symptoms and my mood brightens and the future seems oh so hopeful.

I’ve been on Prednisone for three weeks now (my feeling better started about two or three weeks before, so I can’t credit Prednisone). As much as I don’t want to be on it, every doctor I see has encouraged me to give it a try for diagnostic purposes. It’s only 5mg, but it was still rough in the beginning. I wasn’t sleeping well and I was grouchy and hungry. Those side effects seem to have abated, but I have others that continue: more facial hair growth (which would be great if it were my eyebrows and eyelashes) (but it’s not), swollen, hot hands and feet and constipation. The latter is the biggest problem. I feel like my bowel is inflamed, swollen and stagnant, which is the opposite of what I would think steroids would do. On the plus side, my skin is much, much better (although I was warned about the Prednisone-withdrawal acne flares by my dermatologist) and my joints seem to be bothering me less in the night (specifically, my shoulders and hips. They still crack and pop constantly, but they’re not as sore).

I saw my first naturopath. Some of you, I’m sure, will roll your eyes and some of you will wonder WTF took me so long! I am in the best place possible to visit excellent NDs because Bastyr University is right up the road, but I’ve held out because my faith has always sat solidly with allopathic doctors and western medicine. But, now, I’ve lost all faith. I told her that, too. I told her I am conflicted: On the one hand, I applied, got in and intended to attend Bastyr. I have researched it and I know the training they give and the scope of treatments NDs employ… And, on the other hand, for reasons I cannot quite understand, I want some big machine to find the problem inside me and some specialist to prescribe a drug that will make it all better and I can go on living. I know better! I know that what happened to me was the perfect storm of genetics, upbringing, lifestyle choices, viral exposure, toxin burden, detox pathway blockage, immune system malfunction, nervous system blitz etc. I know that I need full-body, whole-life help, so I’m not sure why it took me 40 healthcare practitioners to finally see an ND.

Well, let me tell you, I left in tears of gratitude. I needed someone to replace the Good Doctor and now I have the Better Doctor. She spent 3 hours with me. What?! Who does that? She took my history from womb to present. She addressed everything. She had ideas to support my system from all angles: endocrine, digestion, liver, adrenals, nutrients, lymph, circulation and on and on. She said, “Email me any time and, if you are scared or freaking out about a symptom or side effect, call me.” Who does that? She said she wanted to come with me to my endocrinology follow-up to hear what the doctor had to say from the horse’s mouth. No cost. Who does THAT?!

She wants me to try some things that I would normally scoff at, such as castor oil over my liver and high-dose vitamin C, but, what I keep reminding myself is: a multi-vitamin gave you the worst side effects you’ve ever experienced . Your weird pressure-point-restore-circulation physical therapy is the only thing that has helped. So, I’m open to anything. She wants me to come in every week for hydrotherapy. I’m not sure what this involves yet. I’ll let you know.

The clinic gave me a huge discount on the visit and supplements because I have no income and it’s located about 5 minutes from my house, which means I can drive myself on good days. All in all, I’m excited. But, I have a history of being excited by first appointments and disappointed in the long run, so it’s a cautious optimism.

I finally managed to apply for disability. My “rehab counselor” (aka shrink) gave me the name of a lawyer and that’s all I needed because I couldn’t manage to get going on my own. I never spoke to the lawyer, only her assistant who told me what info they needed. I spent a few weeks creating a spreadsheet of all the doctors I have seen, clinic addresses, tests ordered, drugs prescribed and, when the phone appointment happened, she didn’t need anything else (thank god because talking is still so difficult). The hardest part was I got a letter from the lawyer saying they will submit the info, it will take 6 to 8 months for a decision. It will probably be denied and they will file an appeal and if I don’t hear from them for a year or two, don’t be alarmed. I knew this was the case, but it was demoralizing to see it in print. If I had managed to apply or find a lawyer when I left work two years ago (how the hell has it been two years?!? LIFE IS SLIPPING BY!), I’d already be at the appeal court date by now.

That’s about it for now. I’m very busy this month: a teeth cleaning, a new dentist for a new oral appliance for sleep apnea (and it all starts over from the beginning) and follow-ups with my GP, rheumatologist, nutritionist and dermatologist, plus the hydrotherapy and mental therapy appointments… Exhausting.

It’s chilly again here and one of my dogs broke his toe chasing squirrels, so we’re all stuck back in the house being lumps on logs. I did manage to make it to the cemetery on my mobility scooter on that last hot day (thank you, husband, for making that happen). It was glorious.

IMG_20140417_120903

0501141652_20140501185835902

IMG_20140501_172815

IMG_20140501_180842-1

by

Emboldened and Emblazoned

Emboldened by my moderately successful drive to the nutritionist, I decided I could drive myself to the sleep doctor’s office on Monday, which is only a little bit farther away. I was there for the hundredth time to fit my oral appliance for sleep apnea. It has now been a year-long debacle and I’m pretty sure I’m going to have to find a completely different brand and a completely different dentist and start over. That also means it will cost me $850+ instead of the $0 that the current device was going to be because the clinic wrote off the cost to me after the first three mess-ups.

I brought a thank you card and some fancy chocolate to the orthodontist because, the last time she saw me, I was literally being carried out of the office by my husband, unable to speak and having a total body meltdown, after being there 2.5 hours. It was mortifying, and she’s always been considerate of my illness and empathetic, so I wanted to thank her for following through. She burst into tears. And I mean burst. She didn’t just tear up, she started crying so hard, she couldn’t speak. That made me wish I’d given her a far nicer gift. She said (when she regained composure) that it meant so much and she knew how hard it had been on me and I’d stayed nice throughout the process… It’s true, I did stay nice because I love my sleep doctor and, really, it’s a bad product, not a bad clinic, but they wrote off the cost because I made it clear to the clinic manager that that was the appropriate thing to do. I also made it clear, in writing, that the problem was not with me and had nothing to do with my illness or my anatomy. And I’ve started the conversation about getting help with the preauthorisation for some different type of device from a different clinic. I don’t think it’ll work, but I’m politely yet firmly letting them know that this was their problem and I shouldn’t have to pay full price for another mold to be made. But let the orthodontist think I am all peaches and cream. 🙂

Anyway, on Monday I was going back for a final fitting and it was 1.5 hours again of putting the thing in my mouth, grinding down the pressure points, spraying awful green chemical crap in the mouth piece, putting it in, clenching my jaw, pointing out where it’s hitting my teeth… on and on, over and over… That process takes so much out of me and hurts my neck and my jaw and rips up my lips. Plus, I had a horrible hypoglycemic episode and had to eat red dye #2 glucose tablets. Ugh.

When we were done, I couldn’t drive home – the world was spinning and my ears were screaming and my vision was blurry. I called my husband for rescue. He and his friend that he works with came to collect me and the car, god love them. I lay down on the concrete slab outside the clinic to rest while I waited. A 40-year old kicked back on the concrete in front of a sleep clinic in a sort of urban strip mall didn’t seem quite as acceptable as a similar sight when I was 20, lying on the concrete steps of a university building, writing poetry, feeling beatnik. But, oh well. I’ve laid down on restaurant floors and airplane aisles; I have no more qualms.

The sunny silver lining was: it was summer that day. One day of crazy heat. I took off my big duffle coat and then my sweatshirt and then my scarf and then my long-sleeved shirt and, by the time my husband arrived, I was in a tank top, baking myself, in deep meditation.

0331141554 (1)

The other great things from this week:
A long visit with Z. and sweet baby Aja (who is not such a baby anymore!).

wpid-img_20140403_233742.jpg

Baby Aja hanging with the Little Guy. 🙂

And I made it to the cemetery on my mobility scooter for a 40-minute “walk”, with beautiful spring coming to life everywhere I looked.

wpid-0402141516.jpg

wpid-img_20140402_171247-2.jpg

wpid-img_20140402_162853.jpg

by

DIETS Part II: compounded eliminations and low-histamine hell. I mean help. :)

It’s 8am and I’ve already been awake for 3 hours. I’m sick and unemployed, I should be sleeping ten hours a night. I should be sleeping late and luxuriating in the fact that I no longer have an alarm clock going off, a company to oversee, and bosses to answer to (… and bosses to whom to answer). My brain should be able to shut down and heal. It’s February, for fuck’s sake. Time to hibernate. I’ve been missing exciting life and getting absolutely nothing done for 17+ months now ~ why does my brain feel like it has to be on high alert ALL. THE. TIME?

Throughout the day, I’m a dizzy zombie, unable to accomplish anything, but my mind is weakly turning over like the Little Engine that Could trying to get up that hill: What do I need at the store? What could be causing my forehead rash? What will I eat for dinner? Will I try a sleep drug tonight? And then the night rolls around and that little engine reaches the top of the hill and starts to fly down the other side: HOW DO WE NOT END UP DESTITUTE? HOW CAN I MAKE MONEY? I NEED AN M.E. DOCTOR! WE NEED TO MOVE!

So, it feels like ~ and I think it’s the reality ~ I never deeply sleep and I never truly awaken. I am existing in a netherworld, a slightly off-center plane of existence where everything is blurry and too bright, where everything is too loud, but also muffled under ear-ringing… a place where you try to do something month after month, but, during the day, it’s too much energy and, at night, it’s too… sepulchral.

Case in point: I honestly thought it had been about one month since I wrote my diet post, but I see it has been more than three months. That’s a quarter of a year. Three months from now, I will be 41 and it’ll have been a year since I wrote “birthday present thank you cards” on my to-do list (they’re still on the list). Actually, three months from now it will be exactly 5/19 (in American date writing) and those closest to me know that that number means something (what, exactly, I don’t know. One day I’ll write a post about my weirdness with numbers).

raspberry pop tarts

raspberry pop tarts

Today, I woke up starving. It’s now 11:30am and I have already eaten a raspberry “pop tart” (click above image for recipe), some apple, a beef breakfast burger with acorn squash and coconut cream, and a mug of bone broth with sauteed kale, asparagus and parsley.

To continue the saga of how I got to this strange way of eating: When we last discussed food, I had just started a strict low-histamine diet. Before ME, my crazy heath history included idiopathic anaphylaxis, autoimmune urticaria and angioedema, flushing, vasovagal syncope/shock, and a slew of other things that could be caused by histamine intolerance and/or a mast cell disorder, such as medication reactions, dysmenorrhea, osteopenia, headaches, tinnitus etc. I thought if I were very strict with the diet, I’d be able to quickly tell whether or not it would make me feel better. I poured over online histamine lists for weeks. Information is very conflicting because histamine levels fluctuate based on where the food was grown, when it was harvested or slaughtered and how long it has been in storage. Also, if you listened to the interview with Dr. Joneja, you know that histamine is a very important neurotransmitter in your body, but it can build up over a period of time and, if your bucket is overflowing, you will have a reaction. In other words, the salmon with lemon on Monday may not do any harm and neither might the wine and chocolate on Tuesday, but the eggplant on Wednesday might just put you over the edge and you have flushing, a migraine, hives. Or worse, anaphylactic shock. It is a process of trial and error for everyone attempting this diet. You have to figure out what affects your body.

The two best histamine food lists I found were Dr. Joneja’s and this one out of Switzerland, which shows histamine liberators and DAO inhibitors (more on this later) as well as foods that are naturally high in histamines. If you are as insane as I am, you can look at the strictest list possible, which I compiled from the two linked lists as well as about five others. My list is so short because I wanted to know the foods that everyone agrees are probably safe.

I ate strictly low-histamine foods for about month and, let me tell you, it was far more difficult than all the other diet modifications put together. Even a loose attempt at low-histamine is a slice of hell. The dilemma in which I found myself was that I kept adding elimination on top of elimination. So, over the course of 20 months, I had eliminated gluten, tomatoes, eggs, and strawberries; then dairy, legumes, all grains but oats, nightshades, and most processed food; then soy, citrus, pork, red meat, lunch meat, shellfish, condiments, maple syrup, and honey. I added a few things back (rice, red meat, honey), but everything else stayed out. Once you adapt to certain meal staples, it is difficult to change ~ especially when someone else is shopping and cooking for you. And then, on top of these, I went low-histamine. I stopped eating most herbs and spices, spinach, avocados, sweet potato, chard, all vinegar, all fruit except apples and pears, all fermented foods, leftover foods, all fish, chicken… and red meat was out again. It was these last few that set me up for the fall. Having no leftovers in the fridge left me scrambling to find things to eat. I hadn’t figured out how to buy the freshest meat or the process of cooking and freezing to ensure I had meals on hand. I hadn’t figured out how to get enough protein when I wasn’t eating dairy, legumes and most meats. I decided not to give up nuts and seeds, which are avoided on the strictest histamine lists, because they were providing the vast majority of my protein. Still, they weren’t enough and my blood sugar started crashing daily, sometimes multiple times a day, sometimes in the 40s and 50s.

If anyone has experienced severe hypoglycemia, you know how scary it can be. Suddenly I didn’t care about any other symptoms, I just needed my sugar to stablise. Mainly veg does not work for my body. And so my husband became the Fresh Meat Scavenger and I became the Great Meat Eater.

To be continued (sooner than three months from now) with honourable mention to ketogenic, alkaline, low-salicylate, migraine, mold, AIP, and low-sulfur/thiol diets…